Heartfelt Journey

What I was expecting was her memory to be gone and her not remember me.  What I didn’t know and am slowly learning is that Dementia is not all about memory loss (thanks Hollywood for the misinformation). What I wasn’t expecting were all the behavioural changes.  The first one I’ve strongly experienced is hygiene or the lack thereof. I do understand that part of the reason is that she has lost her sense of smell and cannot smell the odour she’s emitting.  Also, I know with this disease, she truly believes she showered yesterday and she’s clean.  This belief causes her to become agitated and not understand why I want her to shower or change.  She is still mobile and strong-willed so it’s not as if I can bathe her.  Without her cooperation, I can’t help her shower or change her clothing.  I am also not going to go against her consent.  She may have this awful disease, but I am doing my best to balance her consent. Having her do things against her will that are for her own wellbeing when she doesn’t fully understand the consequences of her actions is something I am trying to be aware of.  This is such a tricky balance that I am struggling with and currently taking workshops to learn how to manage her behaviour as well as working closely with our family doctor.

 For a woman who refused to go out the door without washing herself, she has now become the complete opposite.  Showering or simply changing her clothes and/or undergarments is such a big stressful challenge.  As much as I would love to just let it go, understand her struggles and let her sit in her filth, it is not possible.  Why is it not possible? Well, for one, it is unhealthy for her. I don’t want her getting an UTI, skin irritation from filth buildup, irritation of her bottom due to not washing or changing underwear, just to name a few. And second, the smell within our home becomes extremely unbearable and not livable for my family and me.  I have an autistic child who struggles leaving the house or socializing. When the smell becomes unbearable, she will close herself in her room upstairs and will not come out.  This is counterproductive to the exposure therapy work we are doing with her. 

For 4 months (120 days) before her last hospitalization, she did not shower or wash. Furthermore, she only changed her clothing 3 times and her undergarments 6 times. 6 times in 120 days! Each pair of her underwear was completely soiled when she would remove them. I can’t even begin to describe the smell of body odour and poop!  The couches in the living room smelled so bad that Febreze no longer worked.    I tried on multiple occasions to get her to shower or at least wash certain parts of her body and change her clothing.  Each time would end in an argument where she would have a meltdown like that of a toddler having a tantrum.  She would also become really mean, mimicking me with facial expressions and saying very hurtful comments like wishing death or telling me that having me was her biggest regret.  Despite this type of interaction, I still tried because I didn’t not want her to fall ill.  I would have to pick and choose how many times I had this conversation with her because her outbursts would trigger my daughter.  Like I said, tricky balance. 

What I didn’t realize during these 120 days is how irritated her bottom had become.  When she was hospitalized, I had to help her with wiping when she went to the toilet and not only was her skin irritated, but it was bleeding.  I spoke to the nurses and was reassured that this is common for elderly, especially dementia patients.  Even though at this time she didn’t have the diagnosis, it was clear she had dementia.  Each day at the hospital, I would wash her each time she went to the toilet in hopes to help her skin heal, and it did.  Her stay at the hospital gave me the opportunity to clean the couches and hopefully remove the smells.  We used the Bissell Little Green Proheat with the Pro Oxy Spot & Stain cleaner for 2 days straight and I would say 90% of the smell disappeared (highly suggest if you need to get stains and smells out of upholstery).  We also purchased 2 couch and chair covers which I change out weekly and wash to prevent future odours if we return to not changing for multiple weeks or months.

When she came home from the hospital, she was eager to take a shower and wash the “hospital” off.  It’s been about 2 months since she’s been back home.  The first couple of weeks she was willing to shower once a week and change her clothing every couple of days while changing her underwear daily.  I would go to the bathroom with her and be like “look you’re shower stuff is ready, let me help you take a shower”, and it would work.  Since then, the struggle has started again.  She will go 2 weeks without a shower; she may wash in between that time maybe once if I am lucky.  She keeps the same underwear on for 3-5 days and I must be creative to get her to change them.  I will follow her to the bathroom with a clean pair of underwear and just announce I’m here to help her change.  This works some of the time, but not as often as I’d like.  I have joined support groups to learn new tips and tricks. This is still the beginning and as I learn more tips and tricks, I will share.  I will continue changing and washing the couch and chair covers in hopes to minimize the odour in the house.  I am still shocked how hygiene or loss of hygiene is part of dementia.

If anyone has tips or tricks on how to get her to shower, wash or simply change her clothing, I am open to suggestions.If you’ve made it this far, thanks for reading.  I will continue the journey in the next entry.